About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Sunday, June 17, 2012

Greetings to all, how are you? Well, Celia accompanied me on this past trip for my embolization and everything went very well! Course there was a little mishap or two, but luckily nothing major! Left Corpus Christi early Tues. morning of the 19th, and the weather was nice and sunny when we arrived in CO. Picked up the car rental and headed to lunch @ Whole Foods! Every 3rd visit to CO, I see an ENT so he can check that my air passages are clear before having the embolization, so I had an appt. w/Dr. Lipkin @ 2:30 p.m.

Headed to Swedish hospital right after that to get checked in! Dr. Yakes P.A. Kelly took my vitals and got all my paperwork ready. Andie, another of Dr. Yakes P.A.'s peeked in to say hello! Then Dr. Yakes did too! Gave me a hug and said we were winning! Another of Dr. Yakes P.A.'s Mandi, walked us over to be admitted through the emergency room, so once we finished off that paperwork, Celia and I headed t0 finish the admitting process! I was still in my shorts and polo when Celia noticed my mouth was bleeding! I rushed over to the bathroom sink and sure enough! The nurse quickly got some gauze and I started trying to pack my mouth and get the bleeding stopped! Dr. Yakes Phy. Asst., Kelly was still in the room and she said something like how can you tell where to pack it if you can't see where it's bleeding from! Yeah, that's what I've been saying all along! Anyway, got that stopped w/out too much trouble - defintely the place to have a bleed if you're going to have one though!

Got settled in and each of us ordred a salad for dinner that I never got to touch due to the bleed, darn! Oh well. Had some breathing treatments done to help the bronchitis I had - so Celia headed to the hotel and we had no idea what time I would be having the procedure in the morning.

Had a nurse take me down to have another chest x-ray in the morning, to see how the bronchitis was doing. Turns out, a patient that should have shown up @ 6:00 a.m. for her embolization showed up 2 hours late, so there was an immediate opening for a procedure. Yikes! I didn't know what to do - even thought about waiting another day to give my bronchitis a chance to get better. Anyway, last minute - went for it and poor Celia shows up @ my room later and didn't know where I was! I hear Dr. Yakes used 10 cc's of alcohol inside the troublesome spot inside my mouth, so that looks like a war zone right now.

I get to see a lot of the same nurses of course and had nurse Laura again - she is sooo funny! Just the right amount of sting in a zing she'll throw @ you and make you laugh! She's an excellent nurse though and I always feel very safe with her on duty! Here is a photo of me with nurse Monica - she was a doll! Everyone @ Swedish is so professional and just super @ their job! You just always feel they really care about all their patients! Here is a photo of Resp. tech, Chris Jenky! He is cool - knows his stuff, always in a good mood and has a good sense of humor! I was familiar with him already, so I feel right @ home when I'm @ Swedish!

Sometimes I think it's ridiculous trying to blog and explain this avm to everyone, when I have it and don't even completely understand it myself! I had someone tell me a couple days ago that my face looked better. Well, it's just not a matter of looking better after each embolization - there is still fluids, tissue and stuff that will be debulked and until then, I don't think there will be much improvement! Right now my goal is to not bleed profusely spontaneouslly! I've felt so badly that I've been so out of commission I've missed out on some important family events! Our two nephews in Ohio recently married and I feel I completely missed out on all the goings on because of this darned avm! When the bleeds are happening, there is just nothing else to do but focus completey on that! Now that I've been doing better - I can step back and go - really? How did all that happen and life just goes on. Poor Mark - I've felt like I'm not here for him - I was so weak before, it was enough that I got up and made it to work and home - much less participated in life! I just hope things continue to improve and that I've made a significant turn around where I won't keep having so many set backs with my health!

As always, my friends and family amaze me with their love, prayer and devotion to helping us through in our time of need! Love to all!

Cyndi

I hope to put some more photos up when Celia sends them to me! I have her to especially thank for being so giving with her time, attention and compassion. I used to be bothered by those signs @ the gift stores that said, "my sister, my friend" and I used to laugh about it because until recently, Celia and I had not been especially close. Unfortunately it took having to deal with this avm to bring us closer and I have say I really enjoy the time now that we have to talk and share common interests! We both love to read and Celia generously replaced the cover of my Nook that my Bella had gently been noshing on. I had bled all over the original cover that I had gotten for my Nook, and actually found the same green cover again!

1 comments:

Hi Cyndi,Sounds like the AVM has had another thorough treatment! Excellent. We lost our dear elderly ginger pussycat yesterday and I am heartbroken. His heart failed. I guess not having children means your animal friends are extra special. I know you know what I mean! I hope you are feeling bright and happy.I have two weeks holiday and am planning lots of scrapbooking, sewing, gardening and horse riding. Yay! Love from Fiona XXX aka Miss Poppy Black